AusPATH statement about the Interim Service Specification for the Specialist Service for Children and Young People with Gender Dysphoria (Phase 1 Providers) by NHS England

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In August 2022, AusPATH issued a position statement about the interim report of the Independent Review of gender identity services for children and young people. NHS England has now issued an interim service specification for “Phase 1” services pending establishment of new regional services in England. https://www.engage.england.nhs.uk/specialised-commissioning/gender-dysphoria-services/

AusPATH has major reservations about this interim service specification.

  1. The document fails to state that gender diversity is a normal and healthy aspect of human diversity1, and that many transgender people experience gender incongruence from childhood or adolescence2. Transgender people, binary and non-binary, have a human right to access the highest achievable standard of health care, including gender-affirming care3, 4. AusPATH is concerned that rather than emphasising the importance of equitable access to medically necessary support and treatment for children, adolescents and young adults experiencing gender incongruence, the service specification appears designed to place unnecessary barriers in their way. Additionally, AusPATH states that when gender affirming medical treatment is provided with a standardised multidisciplinary assessment and treatment process, thorough informed consent, and ongoing monitoring and psychosocial support, the rate of regret of gender-affirming medical treatment commenced in adolescence has been observed to be very low1 and the benefits of treatment in adolescence are potentially greater than the benefits of gender-affirming treatment commenced in adulthood1. Hence, the harms associated with obstructing or delaying access to wished-for and indicated treatment for the majority, appear greater than the risks of regret for the few1, when transgender and cisgender people are correctly regarded as equal.
  2. The document makes assumptions about transgender children and adolescents which are outdated and untrue, which then form the basis of harmful interventions. Amongst these is  the supposition that gender incongruence is transient in pre-pubertal children.  This document quotes selectively and ignores newer evidence about the persistence of gender incongruence in children.5 Many older studies of the stability of gender identity enlisted children who did not have gender incongruence or gender dysphoria, but rather, had culturally non-conforming gender expression. The findings of these older studies should not be applied to children and young people who are presenting to gender clinics with strong, clear statements about their trans identity and seeking gender-affirming treatment: it is a different population6. The document also makes unsupported statements about the influence of family, social, and mental health factors on the formation of gender identity. AusPATH believes that children and young people can have agency and can express their gender identity, and that the best course of action is to work collaboratively with the child or young person and family to support the person in their gender expression1.
  3. The document highlights that there have been approximately 5000 referrals to the NHS GIDS in 2021/2022, an increase from previous years. It states that referrals are currently 8.7 young people per 100,000 population.  These figures are not put in context.  The referrals to GIDS range between age 3 and 17.  There are 10,752,647 young people aged between 3 and 17 in England and Wales, making up 18% of the total population7.  Hence, referrals to GIDS are 8.7 young people per 18,000 same age population.  This is a rate of 0.048% of this population, or fewer than 5 in 10,000 young people.  Population estimates of the proportion of people who are transgender range from 0.3% to 0.5% in adults, and 1.2% to 2.7% in adolescents1.  Hence, referrals to GIDS represent a very tiny fraction of the total population of young people, and only a small proportion of those who self-identify as transgender.  These referrals are likely to be made up of those young people who have the most severe gender incongruence.  AusPATH strongly recommends that services should be designed that welcome these appropriate referrals, providing expedited access to expert assessment, and treatment where appropriate1.
  4. The document underscores the expectations of the family and parent/carer around the child/young person’s gender incongruence. AusPATH’s position is that while it is important for health professionals to work inclusively with the family and parent/carer to assist children and young people on their gender journey, the needs of the child/young person must be paramount1. Family acceptance and support is essential for wellbeing8,9,10.
  5. This document seems to triage treatment based on an ability of the child or young person to prove the severity of their gender dysphoria. There is a reference to “the clarity, persistence and consistency of gender incongruence…”. AusPATH believes that each person has a unique gender journey. There can be many reasons why children and young people may have trouble expressing or understanding their own gender incongruence. AusPATH believes that all healthcare should be patient-centered and individually tailored1.
  6. This document discourages social transition in pre-pubertal children. This is despite recent evidence pointing to positive mental health and social well-being outcomes in children who are allowed to socially transition in supportive environments before puberty11,12. The document refers to the so-called “risks of an inappropriate gender transition” but does not name these risks or provide a reference for this statement. There is a section with criteria to support social transition in adolescents; this seems to suggest that adolescents will only be supported to socially transition if they meet the criteria set by the service. This represents an unconscionable degree of medical and State intrusion into personal and family decision-making about simple everyday matters such as clothing, name, pronouns, and school arrangements. Ultimately, social transition in practice is a personal and family decision, led by the young person, and should not require medical permission.  AusPATH does not support a gatekeeping approach to social transition1.
  7. This document severely limits access to puberty suppression by only allowing treatment in the context of a formal research protocol. The eligibility criteria for enrolment in this formal research protocol are not specified, but the concern is that they will be restrictive. AusPATH disagrees with this approach, and emphasises the increasing evidence that access to reversible puberty blockers, and later gender-affirming hormone treatment if wished, is associated with positive mental health and social well-being in adolescents with gender incongruence, and that adolescents are satisfied with these treatments and perceive them as essential and life-saving1. AusPATH is concerned that the NHS is taking inappropriate approaches to evaluating the established body of evidence, and is therefore drawing erroneous conclusions underestimating the effectiveness of puberty suppression.  It is ethically problematic to compel adolescents to participate in a research study to access medically-necessary treatment; research participation should be voluntary and should not occur under coercive conditions,13 and in clinical research “the safety and wellbeing of the individual prevail over the interests of science and society”13.  It is also concerning that the document does not describe any process for provision of estrogen or testosterone therapies for older adolescents.
  8. At several points in the document, there is an emphasis on “careful exploration” of a child or young person’s co-existing mental health, neuro-developmental and/or family or social complexities. There is also a suggestion that a “care plan should be tailored to the specific needs of the individual following careful therapeutic exploration…”  AusPATH is concerned that this appears to imply that young people who have coexisting autism, other developmental differences, or mental health problems may be disqualified, or have unnecessary delay, in their access to gender-affirming treatment.  This would be inequitable, discriminatory and misguided1. AusPATH recommends that puberty suppression, where urgently indicated, can be commenced promptly and proceed alongside and at the same time as any necessary diagnostic clarification of other conditions, or treatment of other conditions1. Whilst careful assessment is imperative, undue delay inherent within a model of care is not a neutral option and may cause significant harm to those accessing services1.
  9. There is an alarming statement in the summary that “the primary intervention for children and young people… is psychosocial (including psychoeducation) and psychological support and intervention.” In another section, the document goes on to state that one outcome from the screening process would be “discharge with psychoeducation…” Disturbingly, this decision might be made without speaking directly with the young person or family. Taking No 8 and 9 together, this document seems to view gender incongruence largely as a mental health disorder or a state of confusion, and withholds gender-affirming treatments on this basis. AusPATH calls attention to the fact that this “psychotherapeutic” approach, which was used for decades before being superseded by evidence-based gender-affirming care, has not been shown to be effective1, 14. Indeed, the denial of gender-affirming treatment under the guise of “exploratory therapy” has caused enormous harm to the trans and gender diverse community and is tantamount to “conversion” or “reparative” therapy under another name.
  10. This document reasserts the outdated “gatekeeping model” of access to gender affirming care. There are many references within the document to patients only being able to access care and be referred to the next intervention down the line if they can meet criteria set by the service. There are clear statements that if adolescents are taking puberty suppression or gender-affirming hormones obtained elsewhere, the service will not provide any care. The purpose of this section seems to be about empowering the service to withhold treatment and health monitoring from children or young people who have obtained medication without the permission of the service. AusPATH affirms the human right of self-determination in health care4. Children and adolescents can contribute substantially to their health care decision making, with age-appropriate capacity to weigh the risks and benefits according to their own judgement15,16,17. Furthermore, AusPATH recommends a harm-minimisation approach, and encourages doctors to work with people who access treatment from other sources in a non-judgmental manner to help them to maximise their health status1.
  11. The document states that general practitioners would be advised to “initiate local safeguarding protocols” if a child or young person obtains puberty blockers or hormones from another source. This recommendation, which would see families reported to child protection services, is gravely concerning.  The draft service specification makes it clear that it will be difficult to obtain prompt access to puberty suppression.  Families who are in the position of seeing their young adolescent descend into suicidal distress as they continue to experience incongruent pubertal changes, whilst being unable to access appropriate care from the NHS service, may make the difficult decision to obtain puberty suppression through non-NHS sources, as caring parents affirming their child’s identity and supporting health care according to international treatment standards.  These parents would then be at risk of being reported to child protection services, a ludicrous and dangerous situation; or a general practitioner with a better understanding of gender incongruence might be put at risk of censure for refusing to make such an inappropriate child protection referral, against the recommendations of the specialist service. AusPATH believes that the appropriate interim service specification should instead be supporting GPs and families to provide the best evidence-based and compassionate care for children and young people with gender incongruence, including access to puberty suppression and gender-affirming hormones where indicated1.

Overall, AusPATH finds serious flaws in this document, which sets out a plan for a service for gender diverse children and young people in England that is likely to cause enormous harm and exacerbate the higher rates of suicidality experienced by these young people in the context of ongoing pathologisation and discrimination.  AusPATH urges NHS England and Wales to reconsider its approach, which is now contrary to the progress being made in many countries around the world and incongruent with statements from the World Health Organization4 and the Yogyakarta Principles3 relating to the right to the highest attainable standard of health.

References

1. E. Coleman, A. E. Radix, W. P. Bouman et al. (2022) Standards of Care for the Health of Transgender and Gender Diverse People, Version 8, International Journal of Transgender Health, 23:sup1, S1-S259, DOI:10.1080/26895269.2022.2100644 https://www.wpath.org/soc8

2. James, S. E., Herman, J. L., Rankin, S., Keisling, M., Mottet, L., & Anafi, M. (2016). The Report of the 2015 U.S. Transgender Survey. Washington, DC: National Center for Transgender Equality.  https://transequality.org/sites/default/files/docs/usts/USTS-Full-Report-Dec17.pdf  Accessed 7 November 2022.

3. Yogyakarta Principles  http://yogyakartaprinciples.org/relating-to-the-right-to-the-highest-attainable-standard-of-health-principle-17/  Accessed November 7, 2022

4. World Health Organization. Human rights and health. 29 December 2017. https://www.who.int/news-room/fact-sheets/detail/human-rights-and-health   Accessed 8 November 2022.

5. Ehrensaft, D., Giammattei, S. V., Storck, K., Tishelman, A.C., & Keo-Meier, C. (2018). Prepubertal social gender transitions: What we know; what we can learn—A view from a gender affirmative lens. International Journal of Transgenderism, 19(2), 251–268.

6. Temple Newhook J, Pyne J, Winters K, Feder S, Holmes C, Tosh J, Sinnott M, Jamieson A, Pickett S. A critical commentary on follow-up studies and “desistance” theories about transgender and gender-nonconforming children, International Journal of Transgenderism, 2018; 19(2):212-224. https://www.tandfonline.com/doi/full/10.1080/15532739.2018.14563907. 

7. Office of National Statistics, UK.  https://www.ons.gov.uk/peoplepopulationandcommunity  Accessed 7 November 2022.

8. Pariseau, E. M., Chevalier, L., Long, K. A., Clapham, R., Edwards-Leeper, L., & Tishelman, A. C. (2019). The relationship between family acceptance-rejection and transgender youth psychosocial functioning. Clinical Practice in Pediatric Psychology, 7(3), 267. https://doi.org/10.1037/ cpp0000291.

9. Russell, S. T., Pollitt, A. M., Li, G., & Grossman, A. H. (2018). Chosen name use is linked to reduced depressive symptoms, suicidal ideation, and suicidal behavior among transgender youth. Journal of Adolescent Health, 63(4), 503–505. https://doi.org/10.1016/j.jadohealth.2018.02.003.

10. Simons, L., Schrager, S. M., Clark, L. F., Belzer, M., & Olson, J. (2013). Parental support and mental health among transgender adolescents. Journal of Adolescent Health, 53(6), 791–793. https://doi.org/10.1016/j. jadohealth.2013.07.019.

11.Durwood, L., McLaughlin, K. A., & Olson, K. R. (2017).Mental health and self-worth in socially transitioned transgender youth. Journal of the American Academy of Child & Adolescent Psychiatry, 56(2), 116–123. https:// doi.org/10.1016/j.jaac.2016.10.016

12. Gibson, D. J., Glazier, J. J., Olson, K. R. (2021). Evaluation of anxiety and depression in a community sample of transgender youth. JAMA Network Open 4, e214739. https://doi.org/10.1001/jamanetworkopen.2021.4739.

13. National Health Service Health Research Authority.  UK Policy Framework for Health and Social Care Research. https://www.hra.nhs.uk/planning-and-improving-research/policies-standards-legislation/uk-policy-framework-health-social-care-research/uk-policy-framework-health-and-social-care-research/#allresearch   Accessed 9 November 2022.

14. Australian Professional Association for Trans Health Public Statement on Gender-affirming Healthcare including for Trans Youth. 26 June 2021.  https://auspath.org.au/2021/06/26/auspath-public-statement-on-gender-affirming-healthcare-including-for-trans-youth/   Accessed 8 November 2022.

15. Amnesty International. (2020). Amnesty International UK and Liberty joint statement on puberty blockers. https://www.amnesty.org.uk/press-releases/amnesty-international-uk-and-liberty-joint-statement-puberty-blockers  Accessed 8 November 2022.

16. Weithorn, L, & Campbell, S. The Competency of Children and Adolescents to Make Informed Treatment Decisions. Child Development, 1982;53(6), 1589-1598. doi:10.2307/1130087

17. Steinberg L. Does Recent Research on Adolescent Brain Development Inform the Mature Minor Doctrine?, The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine, 2013;38(3): 256–267, https://doi.org/10.1093/jmp/jht017